Living with Spina Bifida

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Medical management for babies with spina bifida

The primary goal of managing spina bifida is to prevent infection and to preserve the spinal cord and nerves that are exposed outside of the body. Specific management of spina bifida will be determined by the baby’s physician based on:

  • The baby’s gestational age, overall health and medical history.
  • The extent and type of spina bifida
  • The baby’s tolerance for specific medications, procedures or therapies.
  • Expectations for the course of spina bifida.
  • The family’s opinion or preference.

A cesarean delivery is often performed to decrease the risk of damage to the spinal cord that may occur during a vaginal delivery. Babies born with a meningocele or a myelomeningocele usually require care in the neonatal intensive care unit (NICU) for evaluation and for surgery to close the defect. Surgery can help manage the problems, but it cannot restore muscle function or sensation to a normal state. Surgical interventions may be needed for the following:

  • Repair and closure of the lesion
  • Treatment of hydrocephalus
  • Repair of tethered cord
  • Revision of shunts
  • Orthopedic problems
  • Bowel and bladder problems

Not all babies will require surgical repair of spina bifida. Non-surgical management of spina bifida may include:

  • Rehabilitation
  • Positioning aids (used to help the child sit, lie, or stand)
  • Braces and splints (used to prevent deformity, promote support or protection)
  • Medical Management

Life with spina bifida

Spina bifida is an incurable, life-long condition. At CHOC, we work with patients and their families to prevent or minimize each patient’s deformities and maximize the child’s capabilities at home and in the community.

With excellent treatment and care, children with spina bifida can become active, productive people with normal or near-normal life spans. A great deal of each child’s potential for physical functioning—including standing and walking—depends on his or her neurological status. There are many ways children can lead an independent, productive lives with the complications of spina bifida. Some children with spina bifida may have a lower intelligence, have difficulty or be unable to walk, have compromised or lack of function of their bladder and bowels.

As children with spina bifida grow, certain problems associated with spina bifida can cause a deterioration of their ability to function. CHOC Spina Bifida team will work closely to monitor for such problems and work to prevent them. Our team will surgically address deterioration that can be caused by:

  • Hydrocephalous: A condition in which increased fluid and pressure occurs in the brain. This condition takes place occurs in about 75 percent of cases of myelomeningocele and requires surgery to restore normal fluid circulation or to place a permanent shunt to help drain fluid from the brain
  • Syringomyelia: A fluid-filled sac within the spinal cord that can cause spasticity (to have spasms, which are involuntary muscle movements), loss of muscle mass (atrophy) or scoliosis.
  • Tethered cord: A condition in which the spinal cord attaches to scar tissue at spina bifida repair site. This condition can worsen paralysis, as well as bowel and bladder function. It can also lead to curvature of the spine (scoliosis) and back pain.

Medically and/or psychologically the following issues will be followed, which can also contribute to a deterioration of your child’s ability to function:

  • Chiari II malformation: A displacement of the brain into the upper spinal column. This condition may cause pressure on the brain stem and can result in vocal cord weakness, swallowing disturbances, arm weakness and/or involuntary movements (spasms) in the child’s legs.
  • Orthopedic (bone) problems: These can include scoliosis, kyphosis, hip dislocation, joint deformities, clubfeet, contracted muscles and weaker than normal bones.
  • Obesity: Children with weight problems can lead to further decreased mobility, skin breakdown, loss of muscle tone, diabetes, heart disease, stroke, sleep apnea and inability to perform certain necessary surgeries.
  • Psychological problems: These problems can include depression, anxiety, low self-esteem, difficulties with others.
  • Learning problems: Learning problems can include difficulties with organization, problem solving and focus, as well as low IQ.
  • Latex allergy: Children with spina bifida are at a higher risk for latex allergy. Families should pay close attention to latex avoidance in the hospital and at home.
  • Precocious puberty: Children with spina bifida and hydrocephalus—especially girls—are likely to begin sexual changes early.
  • Urinary tract disorders: Children with spina bifida often have problems with their bowel and bladder function. Learn more about urology concerns for children with spina bifida.
  • Heart problems
  • Vision problems

It’s important for families to work with their child’s team to help spot any new symptoms or and loss of their ability to function. Throughout the child’s life, periodic surgery, medical care and therapy may be necessary to prevent functional deterioration and manage their complications.